Thalidomide survivor calls on government to boost annual payment

Members of the Thalidomide Survivors Task Group hold a news conference on Parliament Hill, in Ottawa on December 5, 2017. Clockwise from left are Fiona Sampson, Mary Ryder, Alexandra Niblock and Lee Ann Dalling. THE CANADIAN PRESS/Fred Chartrand

OTTAWA — A Health Canada revamp of a compensation program doesn't boost annual payments to a level that could make the difference between independence and institutionalization, thalidomide survivor Fiona Sampson said Thursday.

Changes to the federal program announced on Wednesday include an increase to a lump-sum payment for survivors — to $250,000 from $125,000 and an update to eligibility criteria that the Trudeau government acknowledged may have excluded some victims.

Thalidomide was a drug billed as a safe, effective sedative and morning-sickness remedy when it first became available in Canada in 1959 but it was banned in 1962 after it was discovered to be causing widespread birth defects and deaths.

Sampson said Thursday she welcomes Health Canada program reforms but she and a group of survivors are upset the government didn't also increase annual payments for victims suffering long-term harms from the drug.

She said she felt like the oxygen was sucked out of the room and she was punched in the stomach when she learned that Health Canada's most recent update, due in the spring, will not include additional annual money.

The department currently provides annual tax-free payments to survivors ranging in three categories —$25,000, $75,000 and $100,000 — based on individual disability level.

Sampson's group wants that range raised to $75,000, $100,000 and $150,000, adding they were given assurances by the Trudeau government it planned to deliver on additional support.

"To be disappointed, to put it mildly, in the results of yesterday's announcement is a bit tragic, both in terms of adding insult to injury, literally, and it creates really serious health implications for lots of thalidomiders that are living on the edge," she said in an interview.

"We have been so patient and have invested such faith and such trust in this government."

The aging process is compounded for thalidomide survivors due to unusual and unique health circumstances, she added, noting that malformations in her hands and arms make it necessary to use her teeth in ways that they should not be used.

Since falling twice in the past couple years, Sampson said she has been reduced at times to complete dependence on her spouse, requiring him to perform a range of functions "no spouse should ever be called upon to perform."

"If it weren't for my spouse, I would've been institutionalized," she said. "I couldn't go to the bathroom, I couldn't wash my hair, I couldn't feed myself."

Changes to the existing thalidomide support program are also to include a boost to an emergency medical assistance fund from $500,0000 to $1 million.

"We will provide new financial support to more eligible thalidomide survivors, because it is the right thing to do," Health Minister Ginette Petitpas Taylor said in response to the criticism. "The new program will be opened to new applicants, and will make sure that survivors' annual compensation is reassessed if their needs change as they age."

That means if people getting payments at one level develop more serious needs, they can be moved into one of the higher categories. And survivors who haven't been receiving compensation at all can apply anew for the next five years.

The announcement received praise from a separate group on Wednesday — the Thalidomide Survivors Taskforce — that thanked Taylor for working to improve the lives of Canada's thalidomide survivors.

"Today's announcement builds on the program announced in 2015 and creates an additional path for those that may have been impacted by thalidomide to be assessed and recognized," it said.

Outstanding concerns over the inadequacy of annual payments for survivors is a simple situation to fix, Sampson said Thursday.

"It would cost $4 million a year," she said, adding it is not a long-term commitment.

"We are dying off and we are dying off fast ... Thalidomiders are a creation of the government's negligence. So this isn't some kind of good deed that the federal government is so generously engaging in. There really is, if not a legal obligation, a 100 per cent moral obligation."